Attention Rare Disease Community:
On the occasion of Rare Disease Day on Thursday, February 29th, and as part of our #FightForOurLivesadvocacy (which calls on decision-makers to released promised funding for rare disease treatments), we are organizing a march on Parliament Hill.
The goal is to make some noise and let leaders in Ottawa know that they need to release promised funding for rare disease treatments without delay!!
If you’re in the Ottawa area (or planning to travel) and would like to join us for our march on Parliament Hill, here are the details:
- When: February 29th, 10:15-11:00am
- Where: Centennial Flame outside Parliament (111 Wellington Street)
- Logistics: We are meeting at the Marriott Hotel (100 Kent Street) at 10:00am in the Victoria Ballroom (2nd Floor). At 10:15 am we will walk together to the Centennial Flame outside of Parliament, directly in front of the Peace Tower / Centre Block. If you have mobility challenges or can’t make it to the hotel for 10:15, please meet us directly at the Centennial Flame.
- Who can join? Anyone and everyone! Tell your friends and members of your community. The more of us there are, the more noise we’ll make! Parliamentarians will be joining us as well and media, so we are hoping for coverage in the media and statements in the House of Commons on Thursday.
- Need help? If you have any questions or need further assistance, please contact one of our organizers: Hilary Wong-Rieger (hilary@raredisorders.ca) or Jodie Kiss (jkiss@3sixtypublicaffairs.com).
We hope to see you there! If you can’t make it out to the march, but want to help, please follow the conversation on social media (#FightForOurLives) and amplify our message by liking and retweeting posts from the Canadian Organization for Rare Disorders (InX.com @raredisorders, Facebook @RareDisorders) Instagram @raredisorders_cord) and importantly – sharing our “take action” campaign through www.fightforourlives.ca
Let’s unite as a community and show Canadian governments that our lives matter!